Growing Up As An Older Sibling Of A Child With Special Needs

• You immediately notice how tired your parents are with the newest special delivery baby, and I do mean special. Then, you start to notice how tired you are because for some reason, this baby is unlike any other and does not require sleep to survive.
• You become one of the ‘lucky’ ones, a small, intimate group of individuals that have been designated her protectors. She only goes to someone out of this group. Only a group member can calm her down. You feel pretty special to be ranked so highly in her club, and you make paid babysitters look like amateurs.
• You realize things are different with her. None of the ‘normal’ developmental steps are applying to her. Her peers, even at this age, are wary of her. It makes you want to protect her from the world. She is special. She screams a lot and does not play by the rules, but she is your sister, one that requires a little more than any of the others.
• Family members and friends start pulling away, most assuming your parents are pretty much the worst parents on the planet. Why else would their child hit, scream, curse, be developmentally behind and unpleasant. What they don’t know is that she is pleasant. It’s just always on her own terms. She has strengths. She just chooses who she shows them to.
• Eventually, the diagnosis comes. She has autism and attention deficit hyper-active disorder. Your parents finally feel relieved that it isn’t all their fault, but this feeling is quickly replaced by fear. What does it all mean? Will she have a future? Will she ever be able to be somewhat ‘normal’?
• Life becomes a series of doctor visits and medicines. You learn the signs of when she has run out of a medicine. You learn that it’s all a game, trying to find which medicines balance the brain behind her beauty.
• You start losing friends. You certainly don’t want to subject any ‘normal’ person to what lies behind your front door- broken window panes, potential weapons, like toy hammers and butter knives, hidden, lots of tears. You joke about your life and how tired your parents are (still), but none of your friends can comprehend that intense feeling of being needed. She needs you. You’re still in her club. Your parents need you. God bless them. They’re just doing the best they can. You have a choice really. You could say no to all of it or try to. Or, you could rise to the occasion. It makes you a better, more understanding person in the long run anyway.
• When you start going through your early teenage years, you’ve had enough though. Life shouldn’t be like this. No one you know has to put up with the things you do. When you get out of the shower, you shouldn’t find that your towel had been used as toilet paper because she didn’t think to look under the sink for more and panicked. You should be able to have slumber parties and care-free time. You shouldn’t have to clean up the broken pieces of your belongings every day after school before homework because she got in there for ten minutes. This isn’t normal. News flash, you’re no longer normal. You’ll be better in the long run because of it.
• Coming out of those ‘angry’ years, you notice how people stare. You want to box her up, not to keep her from the world but to keep the world from her. Completely out of control melt-downs are met with intense, judgmental stares accusing us that it’s our fault. Why didn’t we stop her? We clearly don’t know how to raise a child. They would do blah, blah and blah and that child would never act that way again. It’s interesting how many people think they can do it better. You’d love to see them try. But, you’re still in her club, and in the off-chance you see a melt-down about to occur, you act fast, lifting her away to put her focus elsewhere like on the colorful stained glass windows at church. Sometimes it works. Sometimes it doesn’t. After 30 minutes, your arm is killing you, but you know if you put her down, it’ll all be over. The storm will return. You prefer the calm.
• Eventually, you find a few friends that learn about your secret life and don’t run away. They stay, and you’re more than surprised. You may even find a boyfriend that finds your secret life interesting and a part of what makes you who you are. There’s a complexity that comes with being a sibling of a special needs child. You are now growing into a deep, reflective person, and others respond to it. Some even admire it, especially adults. You are wise beyond your years they say. Sure, you still do the stupid stuff that most everyone does when they’re young and carefree, but you’re only acting. You’re not really carefree.
• You start to worry for her more. How will her first day of school go? What if she hits someone? What if the kids are mean to her? Will they make fun of her eclectic, un-matching outfits? What will she do at recess? What if she breaks another bone? How will she ever play the sports she so loves to watch? You’re not her mother, but you sure do feel like you’re one. In reality, she has lots of mothers now. Of course, your mother is the best, but now other women have stepped into her life to love her unconditionally. For your mother’s sake and for her sake, you are truly grateful.
• When the time comes for college, oh are you ready- ready to jump this popsicle stand into a new life where no one knows you and your background. You get a fresh start. It is nice, but you quickly find yourself missing the chaos. You hear yourself telling classmates about your sister and the crazy stories that come along with her. No one is more surprised than you to learn it’s hard to live without her around you- asking you the same question 40 times, following you around, planning your life, reminding you of your mistakes or how much trouble you’re in, destroying your things and just plain loving you. You may or may not need some counseling to deal with your homesickness.
• By the end of college, you don’t even remember what it’s like to be around her for 24 hours. Every time she visits, you are happily waving to her as they drive away to return home. But, you use her story in school projects all the time. It makes you stand out in class from all the rest. You start understanding how being her big sister has shaped your life, for the better. Sure, you’d love nothing more than to punch her in the face sometimes. (God help any other person who feels that way who isn’t immediate family. They will get your wrath.) But, she is literally a piece of who you are. She will never understand that, even if you try to explain it to her. It’s too abstract, but you love her unconditionally. She makes you so angry and yet so happy. Her accomplishments are celebrated with that beautiful dimpled smile of hers, and she wants nothing more than to see you smile back to her.
• Nothing changes when you become an ‘adult.’ She’s still obnoxious. She has a new label, ‘bipolar’, and becomes more violent. You have to try to protect your mom and littlest sister from her at times. Those are the low points, the lowest you hit with her. She’s become stronger. You have to step up your work-out game in case she ever turns on you. You can’t show her how scared you are of her or she’ll take advantage of it. Life with her becomes dark and bleak. You see no future for her. All the progress that she’s made over the years is non-existent. The doctors say it’s her teenage hormones, and you pray she grows out of it. There is little light at the end of this tunnel, but you keep some glimmer of hope, mostly for your parents who are utterly exhausted and at wit’s end. Your husband wonders why you allow your family to drain you so much. It’s a choice you make he says, and he’s right. For the sake of your life and for the health of your marriage, you have to choose. And so, you reluctantly start backing out of a leadership role for her life and pray that this is not what her life is determined to be forever. She deserves better. Your family deserves better. You deserve better.
• The light at the end of the tunnel does come. It feels like an eternity, but changes start happening for the better. Her medicines have been adjusted countless times until finally one combination balances her. She’s gone back to school into a classroom full of peers with special needs. These peers aren’t hateful to her, so she loves school again. Your parents aren’t scared of her anymore. Your brother and sister can tolerate her again. Order is somewhat restored.
• You have hit a moment of rest, that is, until she is 22 and can no longer go to school. What then? Will she live with your parents forever? When will she become your responsibility because that’s bound to happen at some point. Will she work? Will she fall in love? Will she have lasting friendships? Will she. Will she. Will she. You’re happy that she’s at a resting point in life, but her unknown future is frightening, as it has always been. You try to focus on what you do know. She has more people who love her now than she ever has before. They truly love her for her and see the strengths you have always seen. They try to watch over her, just like you always have. They too get defensive of the stares. (In fairness, she stares at everyone…) You’re comforted by her support group. Freakish things still happen. You deal with them as they come. You want to tell the young mother who called the hospital security to report her as a baby kidnapper what’s it’s like for her to be in a world where she doesn’t fit in, where she’s different. You want to tell the people who get frustrated with her questions and intensity how hard it must be for her to have her mind swirling that quickly all the time. Not everyone understands, but you are blessed and lucky to have her as a little sister. You’re still in her elite club, and you’re a better person for all of it.

P.S. All of these stories are very true even if they sound unbelievable. Trust me, we thought so at the time too. My mom wrote a book about Rachael called Painting Rachael. You can find it on Amazon if you’d like to learn more about Rachael’s childhood and autism.

Written May 6, 2016